Sunshine Saved my Life
by Chantal Moll
March 26, 2010 was the last day of my previous life. I was 31 years old and 9 months pregnant with our first child - a girl.
The morning after my due date - a Saturday, I jolted awake at 10 AM. Something was very wrong in my womb. I’d never slept this late during my pregnancy. There was no movement in my belly even though my baby girl had been exceptionally active just the night before. After trying a few different things to get my baby girl to move, we went to the emergency department. Several nurses and a doctor tried to find her heartbeat. After what seemed like an eternity, I heard words that are now etched in my memory:
“We can’t find the baby’s heartbeat.”
I felt my world collapse around me and my heart shatter into a million pieces. I began to scream and cry uncontrollably. And then, mere seconds after receiving this news, my despair was interrupted. A sudden tearing pain in my chest and between my shoulder blades stole my screams and stifled my breath. The diagnosis was a panic attack. I was sent home with instructions to return on the Monday to be induced.
Hours later, I was back in the emergency department. I had been throwing up since returning home. A CT was ordered. I was assessed by obstetrics. I was seen by cardiology. Then - more awful and unexpected news. Now, after just losing my baby girl, my own life was at risk. The diagnosis was an aortic dissection. A bad one. It ran from my heart, coursed its way through my body and abdomen to my femoral artery. And I also had a congenital heart defect called a bicuspid aortic valve. It would need to be fixed as well.
Before I knew it I was being rushed in for emergency open-heart vascular surgery. I was told I had less than fifteen percent to survive this surgery and the dissection. The complex vascular procedure lasted eleven hours. Following that, my stillborn baby girl was removed from her home inside me by c-section. I was placed in a medically-induced coma for five days post-surgery. This allowed my body to heal with minimum stress on my organs.
What followed was a long journey to recovery and lots of questions: How did I go from happily pregnant to the point of needing emergency vascular surgery? What was a bicuspid aortic valve? What was an aortic dissection? Why did the dissection happen while I was pregnant? Why was this condition so dangerous? After rounds of genetic testing, it was confirmed that I have an ACTA2 genetic mutation. It predisposes me to aortic aneurysms and dissections. Twelve years ago, not much was known about the condition or how to best manage it.
Today, thanks to research developments stemming from the Montalcino Aortic Consortium, a GADA initiative, ACTA2 is now recognized as a high-risk, non-syndromic genetic aortic disease.
If my doctors had known about my genetic status before I got pregnant, I would’ve been counseled about my pregnancy. I would have learned that I was at a very high risk for aneurysms and aortic dissection. Had I decided to get pregnant anyway, they would have closely monitored my pregnancy, my vasculature and my bicuspid aortic valve. I also would have learned that I had about a fifty percent chance of passing along the ACTA2 mutation to my baby.
—-------------
My life has changed so much over the last twelve years. Several of my family members carry the ACTA2 genetic mutation; some with no symptoms at all. I’ve had to stop working due to my dissections and the complexity of managing my condition. I now have three active aortic aneurysms. One of my current aneurysms measures 4.8 centimeters and will require surgery at 5 centimeters. There are days when I feel a lot of anxiety, like I’m walking around with ticking time bombs inside of me.
I often feel lonely and afraid. I often have questions about my day-to-day life. For example, I wonder about exercise and what is safe. I’ve received advice over the years, but it is often vague and leaves me with more questions. Through GADA and online groups I’ve been fortunate to meet others who have these same questions. I attended a GADA conference a few years back. I met people who share similar health battles as mine. It was wonderful to be physically present with them and to feel supported. I thank GADA for these connections.
I named my daughter Sunshine. My heart aches for the loss of her every day. I am comforted by the fact that I grew a beautiful, tiny angel inside me. I often feel like it should’ve been her that survived and not me. Somehow though, I believe she felt I had a bigger purpose. She wanted me to spread my message of hope, of support and of love. She wanted me to advocate for ongoing education and research in the field of genetic aortic diseases and congenital heart disease. She knew it had to be done and she knew I could do it. She saved my life.
About Chantal:
Chantal grew up in a small South American country called Suriname. She lived there until she was four years old, when her family moved to the island of Curacao before immigrating to Canada and settling in B.C.
We hope you’ll keep GADA in mind as part of your holiday giving. Consider making a gift in honour of someone important to you, or just to help us keep our community growing, connected, and informed.